Holding back the years.

Hard to believe on the 14th of January this year 2020 it will be one year since Dr Sen gave me the piece of paper with the words no sign of any FDG take up in the pet ct scan, which equated to no signs of any cancer in my body. Well a year has passed since I last saw Dr Sen, he now wants to see me on an informal basis once a year until I reach the magic 5 years. It was good to see him at Leeds cancer centre and he is very pleased with my progress and also impressed at how many views over 13,000 worldwide the blog has reached in the last year. We chatted about the rise in HPV driven cancers, as I am also noticing more people contacting me in the last 6 months. At any given time I have at least 20 people in varying stages of treatment and many more of us having successfully completed treatment and on the road to recovery.

One comment I did make was the fact that everyone who comments to me, all have the same gripe; why are they told in a matter of weeks you will start to feel normal, so here’s hoping the parameters will eventually be changed along the lines of some people may feel normal in a matter if weeks, many will take longer. Unfortunately it’s not a one size fits all recovery, there is no magic tablet we can take.

As for me I still have a 20 min lunch time nap most days, I have finished acupuncture treatments for now as I feel they did their job in kick starting things.

Going forward what’s next, well according to the NHS, when I reach 2 years post treatment, what I have with regard to saliva output, eating and general well being is normally as good as I will be. However recent studies in the USA are extending that period to 3 years so that will be interesting to see.

Top tips which I have put in earlier posts, but people keep asking for them.

Make sure you get prescribed Duraphat toothpaste which I need for rest if my life.

Find a soft toothbrush I use Curaprox 5400 individual bristles. amazon sell them.

A humidifier for bedroom I also found useful during and after treatment, mine was a Cool mist brand name again Amazon.

Your hospital should give or loan you a nebuliser, you can use plain boiled water if the saline dries you out, I used mine when mucus was at its worst up to 6 times a day.

Before treatment sets in and makes eating hard, try and bulk up, it’s almost always inevitable their will be weight loss, purely because it’s our mouth and throat area that takes a battering from chemotherapy and radiotherapy.

Ensure, Fortisips or whichever high calorie food supplement your dietician prescribes they aren’t nice but you do benefit from the extra calories. I started diluting them with water. Extra bonus you get extra hydration at the same time.

After treatment finishes keep a record of what you are eating and drinking it helps you and also the dietician. I was told I needed a minimum of 2000 calories and 2 or 3 litres of water in first year after treatment.

Dry mouth; sorry imagine your worst every hangover mouth! Well you may have that every day for a while but forewarned is forearmed. I still use half an Xylimelts tablet, pop it in your mouth before bed. It helps me to sleep so that I get at least 8 hours with odd sips of water during night. I get them online from the mouth ulcer company, just keep them away from pets as they are poisonous to dogs and cats.

My eating is almost back to normal now, I still can’t eat anything spicy, it may come back it may not. Don’t be surprised if your favourite foods have been replaced by things you didn’t like pre treatment it seems common among fellow sufferers.

What got me through treatment was positive mental attitude, cancer wasn’t going to define me and I would like to think that’s the case. John and I now look at it as a blip in our life. On a plus side we’ve made many friends and acquaintances through this blog and the cancer forums that I will continue to support as long as someone out there needs me. The blog will continue to be updated as and when I have something new to say or I have found out an interesting fact.

Christmas was a lot more hectic than last year, Christmas Eve buffet was for 13 of us and Christmas Day Lunch 10 of us all at our house.

See below for the tribe photo

How did I cope, well it was organised with military precision, lots of lists and some delegating. Food wise it wasn’t my best day, meat can still be difficult to eat Pork and Turkey just didn’t want to go down. Plus I started with a cold a few days before the first proper cold since treatment began in July 2018. When talking to Dr Sen he did say colds will linger longer due to immune system being compromised by the chemotherapy, so it’s a point to bear in mind. This year we both had the flu jab, I couldn’t have it last year due to pet ct scan not being until January, I wasn’t allowed to have any live vaccines.

Well what’s next for us: Spain is beckoning so will soon be back on our bikes.

Last Christmas

Well where has that last 12 months gone, quite scary I’ve just recently read last years posting and realise how far I have come. Last year I was happy to be eating relatively ok, it’s only when I read the article back I can see how I have progressed.

Don’t get me wrong I still have bad eating days, Thursday, Friday and Saturday this week was dire. But yesterday rib-eye steak, home made chips and roast vegetables including what is now my all time favourite aubergines. Today mashed swede and carrots, savoy cabbage and sausages cooked in a mushroom and Pedro ximenz sauce (closest I get to any alcohol these days). Thoroughly enjoyed both meals, although tomorrow may be a different tale.

Weight wise I’ve put on just over 7 pounds from last Christmas, which is fine I have now stabilised. Thanks in part to cycling and no longer eating adult sized portions most days.

John and I would like to wish everyone a very Merry Christmas and a healthy and happy New Year, especially all the wonderful NHS staff who work so tirelessly day after day including Christmas.

The blog has now had over 14000 views from all 4 corners of the world and many of you have passed comments back to me. I hope I have replied to each and every one of you and many of you still message me for hints and tips, which I am only too pleased to help. Ok we are all different and progress at differing stages but hopefully we all get there in the end.

Christmas last year due to family illness was a quiet one, just John and I with an Aldi turkey roll. This year we have 11 family members for Christmas Eve tea and 10 for Christmas dinner. I am hoping its a good food day, but at least I am still here alive and kicking raring to go.

Early January brings my long awaited appointment with my oncologist Dr Sen at Leeds Cancer centre, strangle to say I am really looking forward to seeing him. He wants to see me every January until we reach the magic 5 years. I know many of you stress when it comes to ENT appointments, maybe I am a lucky one as I don’t stress at all, in fact I look forward to a quick chat normally with Mr Gunasecker at my local hospital.

I have stopped acupuncture sessions for now, I have had 6 in total and I do think they have helped my saliva, ok it’s not normal but it’s no longer as thick and sticky as it was. Jo my acupuncturist always said 4 and see how it goes I think I’ve probably gone as far as I can for now with it.

I don’t take any medication apart from one amolodapine tablets which I took prior to treatment, and 10 mg of omaprozole for acid reflux which is a well known side effect of our treatment. I still tire easily, a 20 minute nap around lunchtime sorts me out. Most days I can walk to our shops a feat I couldn’t do last year, plus I have been lucky with my cycling I can bike a good 55 /60 km which both John and I are pleased with. Sleeping is no problem I regularly get 8/9 hours solid sleep. Reading has come back to me and I can potter in the garden, knit and crochet so all in all everything going great.

Things aren’t perfect, my mouth can go as dry as a bone for no apparent reason, I still can’t drink tap water so it’s bottled water every day. For some reason I don’t get a runny nose the nasal mucus seems to gather at the back of my throat, although I can sneeze, strange but true. I still miss most fruits, ok I can do bananas, bananas are so boring ! Much to Johns chagrin my body thermostats not quite right as far as the cold goes, so I turn the thermostat up he turns it down ! My gums are receding quicker than I thought they would, our dentist Amita is keeping a close eye on them. Last week I needed a small filling first one in years, my oral hygiene is excellent the dentist says, but it’s a side effect of dry mouth no mattter what I do it’s inevitable that I may need more dental work, but will handle that as and when.

Thinking back to last Christmas I compared my mouth when waking to be like having superglue in it, so I suppose progress can be measured by now when I wake it’s like having the glue we used as children just gloopy, here’s to next Christmas being almost normal. I do know I will never have 100% saliva due to my uvula ( dangly bit at back of throat )melting during treatment, which also acts as a saliva gland shooting saliva down the throat when we talk,and yes I talk a lot !

No matter where you are in treatment, just look at me and if I can do it anyone can .

I have come across a very informative website http://www.throatcancerfoundation.org defiantly worth a look.

Plus a friend who I have made on the Macmillan site has her own blog about her brush with base of the tongue cancer

https://todaymycoffeetasteslikechristmasincostarica.org

Onwards and upwards.

Yes I’ve had my hair cut ,it was looking scraggy so off it came.

It’s my life

Keeping in touch with the theme of song titles; as Bon Jovi sang Its my life it’s now or never, I ain’t going to live forever, I just want to live while I’am alive. Well I can say both John and I are almost back on track. We have just returned from latest trip to Spain and I did the final cycling challenge that I set myself back in the dark days of chemo radiotherapy.

We cycled from sea level over a mountain down to sea level and back up over the mountain down to sea level. Total of 66 kilometres with a stop for lunch so definitely living our life’s.

I am now November 2019,15 months post radiotherapy and still have periods of dry mouth and most days a quick 20 minute power nap.

Whats new: I am eating better, chicken has finally appeared on the menu which does help. I still can’t eat chicken breast but leg wing or thigh meat is ok, better with a gravy or sauce. Curries, chilli or anything spicy is still a step too far for my delicate mouth. Once again fresh mince no matter how fine, no matter which meat beef, pork, lamb or turkey still sticks, but anything processed like lasagne is perfectly fine, strange but true.

I have met and been in touch via my blog, Cancer U.K. or Macmillan sites lots of new friends and we all have our own idiosyncrasies so if you are reading this don’t think everything that I’ve been through will apply to you, some will and some won’t. I just hope I can continue to inspire fellow sufferers. Please don’t be afraid, I am a true wimp and if I can do it anyone can. I still repeat please keep off Dr Google the facts on there are not regulated and will scare you. Positive mental attitude got me through it and am sure it will help you.

A typical day for me if we are away is:

Breakfast usually porridge, fruit juice, herbal tea.

Cycle or Walk a few hours neither if which I could do much of a year ago now usually cycle at least 30 km or walk 10 km.

Lunch either tapas or if in and mouth feeling ok crackers and cheese!Definitely not eating those a year ago. When at home soup or scrambled eggs on toast.

Afternoons if away chill out and read, if at home try and garden plus do boring things housework included.

Tea again pretty boring but beats Ensures (lol) Fish, lamb (my favourite), pork usually with roast vegetables potatoes or lasagna. Rice is still beyond my palate.

Snacks very rare, I can manage a few plain crisps, a little chocolate, if I have a biscuit I must dunk in coffee.

Oral care is still a big part of my day. I can now use an electric toothbrush but still have my trusty curaprox ones at hand. I have been told duraphat toothpaste will be the only one I will be able to use for ever. Bioxtra mouthwash have tried others but all still too strong, plus inter dental toothbrushes to get any waste food from in between my teeth. I am on 3 monthly ENT appointments and visit my dentist every 3 months, both are very happy with how I am progressing.

I also pay privately for acupuncture for dry mouth, is it worth it? I think it is but you have to believe in alternative therapies.

Not everything is rosy.

It’s frustrating how one day or one week I can eat things perfectly fine then lo and behold the next week the same things just won’t go down! Our shopping bill has increased as some days I have to throw food away and cook something else. Likewise my body thermostat can’t cope with the cold as it used to, thankfully I can cope with temperatures comfortably up to 35 degrees. So once again our heating bills have increased. Ok it’s a small price to pay to be alive, but it’s all the little hidden things that soon mount up.

Loss of my uvulva.

For those who missed that in an earlier blog I didn’t discover until a year post treatment that mine had shrunk to a stump, as it accounted for producing copious amounts of serous thin saliva which I won’t ever regain. All I can do is try and encourage my remaining saliva glands to make more. Hence the copious amounts of water I still consume.

Explanation of what the Uvulva does.

Function: During swallowing, the soft palate and the uvulva move together to close off the nasopharynx and prevent food from entering the nasal cavity. It also produces an abundant amount of thin saliva which serves to keep the throat lubricated. It has a function in speech as well, so I will never be able to roll my rrrrrs, no big loss.There is one plus point I can never keep John awake as I can no longer snore ! However John says I still make noises which keep him awake.

When I reflect back to this time last year I have come a long long way eating wise plus I can enjoy a cup of coffee now. Personally I haven’t had the inclination to try alcohol, I was never a big drinker so no loss there. Some of the people who have been through treatment with me are now able to enjoy a drink every now and then.

Nighttime: Now I regularly get over 7 hours solid sleep, I still use 1/2 a xyimelts every night; (The mouth ulcer company ) online they really do work for me, yes you need some saliva for them to do so.

Medication: Now i take one omaprozole for acid reflux my usual blood pressure tablets, plus the occasional paracetamol.

To anyone starting this treatment it’s hard, recovery time varies, not one person who has been in contact with me felt anything like normal in the 2 weeks that all the consultants seem to advocate. But we all get there, some just take longer than others. I was lucky John sort of bullied me into our first trip back to Spain in October 2018, which I admit wasn’t easy but it did do me a world of good, leaving the bubble of my secure home environment.

My hospital visits are for the next 2 years every 3 months or so, the pressures on our NHS are such that sometimes I have to go a few weeks longer. A question that a lot of people ask me is do I get anxious before each appointment. I reply NO from day 1 of meeting Dr Sen. My oncologist I had every confidence that the treatment would work and the cancer would go and I still carry that attitude with me. People say to look at me now they would never know what I went through last year. The only onward difference is I go everywhere with my water bottle, and if you look closely at my neck where the enlarged lymph node was the telangiectasia is visible. Dr Sen did warn me that I would have a permanent reminder of him every time I looked in the mirror. It doesn’t bother me in the slightest, I know a few people stare and wonder what the marks are, so I tell them !

Ps. still no teenage snogs, everything else back to normal. Maybe I will get one for Christmas! Better look for some mistletoe.

Pretty Good Year.

As Tori Amos sang, it was a pretty good year and it was; as I am still here!

It was exactly one year ago when I had my last session of Radiotherapy, as you can see from the photos below I’ve come through it pretty well unscathed.

Yes I still have issues with dry mouth and sticky saliva, meat especially chicken is still difficult and oral thrush still plagues me due to lack of saliva, but all the above are better than the alternative.

The top photo is a no holds barred shot of how I looked at my worst the 3rd photo was taken in our garden this week. So to all of your reading this I’ve put them in to show you there is light at the end of the tunnel.

One of my worst fears that I voiced at the beginning of my blog the night before treatment started was I was scared would I still be me Hazel, would I change. I think this fear is a rational one and one that most of you will have thought it as well. I can categorically state in my case I am still me! Not a new me! Not a different me. I am still me. I think John and rest of our family hopefully agree with me. I haven’t gone morose, soft or anything I am still me, sometimes a demanding pain in the neck yep that’s me. John described me this way “you still want to do everything you did before cancer, things that might be problematic are an annoyance and are not to be accepted for ever”.

Quick update medical wise, 10 days ago I finally got to see the back of my throat! All swelling had gone and with some manipulation of my tongue I could see the back of my throat biopsy site but something was missing! I called John and asked him to open his mouth and then look into mine. As I thought my clacker or dangly bit or to give it it’s medical name Palatine Uvula had dissolved. So a little bit of Dr Google (advice still applies, keep off it for diagnosis) I got an answer as to why my throat is drying out when I speak. Like most of you reading this I had no idea what it did! Well it’s the source of thin saliva that is directed to our throats when we speak, plus it helps to move food down the throat. Umm no amount of acupuncture’s going to restore that, so now I know what I am dealing with it’s just a case of I have to get in with it. What I do want to know though at my next appointment with hopefully Mr Gunnaaseca is why haven’t I been told that it had melted!

My weight is stable at just under 10 stone, eating wise as long as I plan I can manage pretty much most meals (but not spicy). The main difference is food rarely gives me any pleasure, it’s rare that I say after a meal that I enjoyed it. I still from time to time have to have water to get things down, I can drink a can of pop, rarely coke, sometimes Fanta Orange, using a straw is much better than drinking from the can or a glass. I still haven’t touched a drop of alchol for no other reason other than I rarely drunk previously and have no desire to stress my mouth out any more.

What do I miss? Its the little things, making a sandwich and nibbling on a bit of meat or cheese, if I forget and try it’s deffo reach for the water quickly. A nice bacon sandwich but nope the bread combined with bacon is just a step too far, crisps I adored a packet of Walkers plain, nothing fancy, ok I can eat them but the time it takes and the suffering in my mouth it’s not worth it.

Friends we’ve made some great ones through my cancer diagnosis there’s a small tightly knit band of us that regularly keep in touch. 3 of us plus other half’s meet up for food and a chat, our next meet will be just prior to Christmas. Its good to have what we call cancer buddies as we exchange tips and compare notes, plus John gets to find out from their wives point of views, I throughly recommend to anyone starting this journey don’t wrap yourself in a bubble, as you all know me by now I am not a shy retiring wallflower even through treatment I was the chatty one, ok I knew when people didn’t want to and respected that but Neil and Jo along with Jason and Michelle were happy to chat and we’ve gone from there.

TOP TIPS FOR NEW PEOPLE.

Curaprox soft toothbrushes invaluable for keeping teeth clean.

Duraphat toothpaste on dental prescription.

Buy a humidifier especially for night time mine was a Cool Mist from Amazon.

Your hospital should loan you a nebuliser you can use plain boiled water as well as saline.

Drink as much water as you can it really is vital keep a daily check of how much you are drinking especially later in treatment and first weeks of recovery alongside keeping a track of calories aim for 2000/2500 a day easier said than done.

Most if all keep a smile and a positive mental attitude, if I can do it honestly anyone can.

Please keep in touch if anyone wants any advice I am only too pleased to help.

To John, Nicola, Mel, James and all our extended family and friends too numerous to mention not forgetting all the NHS staff thank you once again.

Needles and Pins

Today 31 July 2019; I had my first acupuncture with Joanne at John Cox Physiotherapy centre at Upton. I have 3 more sessions booked in to try and stimulate my saliva glands into producing more saliva. Too early to pass comment, although my mouth does feel more moist so fingers x. It didn’t hurt, just a quick prick and in went the needles, it sounded like a nail gun but gentler. Took a few minutes then I was left alone for 20 minutes just lie still and chill. Will report progress on next blog.

I have been doing a little research online, again only recognised sites, details below they may help or at least explain scientific advice a little clearer.

https://makesensecampaign.eu/files/documents/Make-Sense-Campaign-Toolkit.pdf

https://www.bahno.org.uk

The top one also has a small section of recipes and some survivor’s story’s, the latter one is the official British Head and Neck oncologist site where you can access the latest news and views from the professionals.

Girl on a bicycle

This girl and some friends got on their bicycles yesterday for our planned charity bike ride. Oh yes it rained on our parade; torrential rain all day long, but we did it.At the moment fund raising stands at £1100 for Leeds St James Head and Neck cancer unit, so very pleased with that, thank you to all who have donated.

http://www.justgiving.com/fundraising/Hazel-Turner24

I will be updating in my anniversary at the end if August with more details of ongoing issues.

Thursday had ENT appointment at local hospital, once again I saw a locum who insisted in the camera up the nose and down the throat. I still fail to understand when I see the ENT consultant he just moves my tongue looks inside and feels my neck pronounces all is well and off I go. With the camera up I end up with extra mucus and a cough for weeks, I do ask but each time get told they have to do it.

This week I am trying an acupuncturist to see if my parotid gland can be stimulated, so will report back on next blog.

Addendum thank you to Elaine Harper for her very kind donation ,Elaine email me if you want to chat .

It was a very good year

Yes it was a very good year as the late Frank Sinatra and Robbie Williams sang, you may think a strange title but in many ways it was.

The photos above are from our ruby wedding in June, which to be honest this time last year I didn’t think I would see, because when you hear the big C you automatically assume the worst.

Ok I got the one thing that we all dread the big C. I also got the all clear, met some wonderful people along the way, many who are now firm friends forever. John and I have widened our circle of friends and even found out new things about each other.

The photo with me and the 2 guys Neil and Jason who were my radiotherapy partners. It was great we could all meet up in happier circumstances.

Yes I have come a long way and still have a long way to go, but looking back to the D D. Diagnosis Day to present day I have experienced the highs as well as the lows.

On Saturday 27th July which is also World Head and Neck cancer day John and I along with Neil and Jo Schofield are doing a charity bike ride. John and I in aid of funds for Leeds Cares and Neil and Jo for Macmillan. Neil and Jo are 2 of our new circle of friends from our common theme of Radiotherapy.

Update on me, weight is being maintained at around 9 stone 10 lb which is good. I keep trying different foods with limited success.

Beef of any variety apart from mince is still very much a no go, the effort eating it isn’t worth the limited calorific value. Although this week I have had success with lamb. My current favourite is oven roasted vegetables as an accompaniment to most dinners; courgettes, aubergines, garlic, onions, tomatoes drizzled with herbs and olive oil yummy. Salad is still a major issue. It just doesn’t want to slide down even with water. Just one if the many variables that us head and neck cancer patients have to face on a day to day basis. It seems that bread and chicken are 2 of the common foods that just won’t go down our throats. Toast I can eat all day but plain sandwich is still a step too far on most days.

Although when I look back like I’ve said before to the early post treatment days I am eating like a king compared to then. So don’t despair if you are in the early stages there is hope.

Cycling

Just returned from quick trip to Spain, intentions were to cycle every day but the African plume heatwave put paid to that, although I did manage 175 km in total.

Cycling is still far easier than walking for me, radiation tiredness is still around, usually a quick 20 minute nap and I am fine. Today I pushed myself a little too far at home, nice day walked to the shops, several of them, the bank, chemist and library finishing up in supermarket. But I had to phone John to come in the car and get me as I wouldn’t have made the 3/4 of a mile walk back. So yes I’ve come a long way but now even 10month post radiotherapy I am still not 100%. One thing to remember we are all different some of us respond quicker than others to each stage, as I often say baby steps is the way to go.

Yes I sat on the beach what you can’t see is the huge parasol that I was under and any colour I have is fake tan, but plenty of factor 50 on my neck and factor 30 everywhere else I was perfectly fine. If I can cope with an unexpected heatwave I feel ok in any weather as 42 degrees in the shade was the highest we had. So just be sensible and life can continue as normal, ok I haven’t had an alcoholic drink but I was hardly a drinker before this so no loss to me. I did try an alcohol free lager which was ok dried my mouth out though.

Thank you to everyone who has generously donated to our charity bike ride, if anyone would like to donate the link is.

https:/www.justgiving.com/fundraising/Hazel-Turner24

This blog has now received over 8200 views since I started it last June , far exceeding my expectations as originally it was a way of me being in control of an uncontrollable situation,and a way for family and friends to hear what I was going through.Now I have had people from all over the world from Australia to Zimbabwe ,and had comments and questions from everywhere.So I hope it continues to help others